With Grace and Grit - Life with Chronic Illness
In spite of (or maybe because of) the roller-coaster year we’ve had, I’ve learned life-changing lessons from living with chronic illness – and have emerged stronger.
Self-reflection. It’s a good thing, right? And if ever there was plenty of time for wholehearted soul-searching, it was 2020. But damn, this year needs to be over.
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Our lives are fraught with missteps and mistakes. Here are a few of the big mistakes that chronically ill people make.
I’m stuck. You probably know the feeling – the ongoing sense of being completely trapped at worst, or at best, feeling suspended in a state of inertia. I’m not moving backward but I’m sure as hell not moving forward.
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Living with chronic illness isn’t easy. It’s even harder when we fake being well – because there’s a price to pay for doing it.
Do you ever feel like the you’re the great pretender? It’s easier than you’d think – especially if you have a chronic illness that also happens to be invisible.
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Living with a chronic illness can predispose us to negative self-talk. It can be hard to prevent our limitations – real and perceived – from changing how we see and value ourselves.
I don’t know anyone who claims to be immune to the potential ravages of negative self-talk. We all do it – although not necessarily to the same degree. Self-doubt, self-loathing, self-consciousness, self-deprecation – I could go on. But I’m guessing you know exactly what I’m talking about.
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It’s widely prescribed and can be wonderfully effective. But the side effects can be wicked. Here are some tips for surviving the side effects of prednisone.
Have you ever taken prednisone? If you have a chronic illness or autoimmune disease that is inflammatory in nature – as so many are – you probably have. And taking prednisone is like balancing precariously on a double-edged sword somewhere between gratitude and madness.
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I never anticipated that I’d find the hidden upsides of chronic illness. If you dig a little deeper you’ll find them, too.
Have you ever been asked if you’re a “glass half empty” or “glass half full” type of person? I’ve never thought of myself strictly in terms of being optimistic or pessimistic. I choose to think of myself as realistic.
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Parenting with chronic illness presents unique emotional and physical challenges. But there are things we can do to help our children – and ourselves – thrive in spite of our illness.
I’m not the mom I’d hoped I’d be. I have – more than once – allowed myself to re-examine the past. And I wonder how I might have parented differently if I hadn’t been ill.
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Family and friends mean well. But sometimes their efforts to make us feel better actually make us feel worse. Here are the top three things not to say to a chronically ill person.
I struggled with the title of this post. I could have gone so many different directions! From the decidedly diplomatic “What Not to Say to Someone who is Chronically Ill” to the definitively assertive “How to Completely Alienate Your Chronically Ill Friend or Family Member in Three Easy Steps.”
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Pets enrich our lives, and there’s a proven connection between pets and our health. But do you know the science behind it?
It occurred to me that for the past thirty years I’ve never been without a pet. From the sweet brown tabby cat I adopted from a shelter in 1990 to our current trio of furry companions, animals have been a constant in my life.
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Your job does not define who you are. Here’s what you need to know about chronic illness and employment so that you can make the best choice to honor your health and your heart.
Right or wrong, we’re strongly connected to the work that we do. We allow it to define us, and that’s a mistake. I’ll set the stage: you’re at a party or some type of get-together and you’ve just been introduced to someone.
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There are three things that I wish doctors knew – because these are the things that make the good doctors great.
I have a love/hate relationship with the medical profession. I’ll bet I’m not alone. I envy people who see their doctor once a year for an annual check-up, and maybe make the occasional visit for a sinus infection or a rash. I’m not that person. If you’re chronically ill, you’re probably not that person either.
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Anger is often a mask for grief. It’s okay to be angry when you’re chronically ill. Once you acknowledge it you can find effective ways to cope so that you can live well.
There are moments – and not just a few – when I recognize that words are the way to the soul. Sometimes, a chain of simple words are tethered together so perfectly that they are extraordinarily profound.
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There are lots of techniques you can try if you want to fall asleep faster. But when the conventional approaches aren’t working, it’s time to give these two unconventional methods a try.
Sleep. A solid night’s sleep. Don’t I wish! Insomnia is an equal-opportunity condition. A quick Google search produces about 71 million results. And while it’s estimated that it effects 30% of the population, knowing that you’re not alone doesn’t make it any easier when you’ve looked at the clock at 1:20 am, 2:40 am and 3:45 am (you get the picture).
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Illness often forces us to change how we live – to find a “new normal”. But there are ways to define your new normal so that you can live well and thrive.
Has anyone told you that you’ll find your “new normal”? I remember thinking about my own “new normal” way back in 2006. I had completed a hell of a long course of treatment for non-Hodgkin’s lymphoma and was in what I like to call the “now what?” phase. The treatment was over. Now what?
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It’s hard to feel productive when you’re too tired to do anything. So when your body demands a break, take the opportunity to boost your mental wellness.
Have you ever felt like your brain wanted to do something but your body wouldn’t cooperate? I have. So. Many. Times. Like many other types of chronic illness, my autoimmune disease is unpredictable. It seems like it’s unpredictability is the only predictable thing about it.
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The one thing that everyone who’s suffering from a chronic illness wants is to get better. But don’t compare your progress to others – you are unique and your road to healing is unique, too.
We know that our disease can’t be cured, but we hope for and can reasonably expect to manage our disease to some degree – enough to see and feel some level of progress. And the possibility for some level of healing means that there is reason to hope.
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The grief of chronic illness extends beyond grief over the loss of our health. We mourn the loss of our place in the world.
Grief. We typically think of it in the context of significant loss, like the death of a loved one. Irreversible. Permanent. Deeply painful. But grief isn’t reserved for that. We can and do grieve other kinds of losses. When we’re chronically ill, we grieve the loss of our health – but we grieve the loss of so much more than that, too.
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Joining a support group can help you feel understood and give you a sense of belonging. It’s another strategy for living well when you are chronically ill.
How did you feel when you received your diagnosis? Alone? Confused? Afraid? I know I did. There is almost nothing more emotionally isolating than facing a disease that you have very little (if any) control over. This is true whether it’s a chronic illness that can be managed, or an acute illness that is severe and threatens your life.
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If you’ve been diagnosed with an autoimmune disease – or are waiting for a diagnosis – there are seven questions you should ask your rheumatologist.
It’s been a year and half since I was diagnosed with dermatomyositis, a rare autoimmune condition that causes fatigue, inflammation, severe muscle weakness and skin rashes. By the time I was diagnosed I had spent two weeks in the hospital – including a couple of days in intensive care.
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The Spoon Theory describes how people with chronic illness need to ration the limited energy they have. But there are four things you may not know about being a “spoonie”.
Are you chronically ill? If so, I’m guessing you’ve heard of the Spoon Theory. It’s a metaphor that uses spoons to describe the practical challenges of living with a chronic condition or disability that has you running on a gas tank somewhere between empty and half full (on a good day).
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Ready to try the AIP diet? These three questions will help you determine if it’s right for you.
Fix me. That’s what I wanted to say when I finally received my myositis diagnosis. Since autoimmune diseases can’t be cured – but can be managed – I knew that I had a long road ahead of me (the rest of my life). And I had felt like crap for so long. I wanted and desperately needed some healing. This isn’t my first serious illness rodeo and I knew that part of my healing would be up to me.
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Is a six foot distance enough? Does wearing a mask make a difference? Do I need to sanitize my groceries? Who knows! What I do know is that there are ways of managing COVID-19 anxiety.
I admit it. I’ve spent hours nervously curled up on my sofa worrying about a virus I may (or may not) ever get. And I only have so much control over that – unless I live alone, leave only when necessary and take every precaution short of donning a hazmat suit. Note to self: the hand sanitizer must have a minimum alcohol content of 60%, of course.
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We never think of long-term disease as a gift. But gratitude is the gift of chronic illness.
I intended to write about the anxiety of being among the “highly vulnerable” during a pandemic. But the truth is that I spent most of the morning writing a COVID-19 article for work – addressing how employers can plan for the challenges of a gradual return business as usual. Frankly, I’m drained. I’ve spent way too much emotional currency today thinking and worrying about this damn virus.
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There are two simple strategies for self-care that you can use to reduce anxiety and improve your well-being.
Take care of yourself. How many times have you heard this expression? If you’re chronically ill, I’ll wager that you’ve heard it a lot. But what does it really mean? How do you define self-care?
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You can’t clearly see them, but invisible illnesses span a broad spectrum of diseases including autoimmune, psychiatric and psychological illnesses and other chronic conditions.
Lupus. Fibromyalgia. Inflammatory bowel disease. Rheumatoid arthritis. Chronic fatigue syndrome. Myositis. Lyme disease. Depression. Bipolar disorder. Post-traumatic stress disorder. HIV. Pulmonary fibrosis. Chronic obstructive pulmonary disease. Congestive heart failure. Chronic pain.
What do these have in common? They can all be invisible illnesses. This is not a complete list – or even a list of the most common. But all of these invisible illnesses share these five honest truths:
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With more than 100 types of autoimmune disorders, the road to diagnosing autoimmune disease looks more like an obstacle course composed of traffic cones, construction barricades, and dead end signs.
Any guess as to how long it takes to diagnose an autoimmune disease? According to the AARDA it takes about 4.5 years. And it didn’t surprise me to hear that. With more than 100 types of autoimmune disease and a broad spectrum of symptoms, getting a diagnosis is like taking a long drive to an elusive destination without the benefit of a working GPS. Even though more than 20 million Americans have some type of autoimmune disease, I’m betting that each of the journeys to diagnosis was different.
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